Headaches are weird. Hitting his head may have temporarily swapped a bearable pain on the outside of his head for the unbearable one inside. I can see that as a tempting trade.
Back when I had migraines–not nearly as bad as Duke’s, but miserable enough–I found that some decidedly odd things seemed to help with the pain. Notably, music with a strong bass component and pressure on my forehead provided a little temporary relief. I would get a dictionary or something and lie on the floor with my forehead resting on it, in the dark, with bass-heavy music playing. It also had the benefit of taking load off my neck muscles, which often cramped when I had a migraine.
Duke, this may be a weird question, but have you changed your pillow lately? Or is your pillow getting flat? If something has shifted the position of your head while you sleep, that could account for the change in snoring, and might be contributing to the headaches.
No, I’ve had the same pillow for a couple years. But it is starting to get flat…it couldn’t hurt to get another one. I’ll look around this weekend for one. Thanks for the suggestion!
The sleep study was last night. I’m a little loopy still from the lack of sleep. After they pasted wires to my chest, legs, and head, they told me they’d slap a CPAP mask on if I showed signs of sleep apnea. About an hour or two into the study they did just that, so I assume I had some apnea. At first I felt like I had a hand over my face…then, worse, someone came in and told me to sleep on my back, which I can never do. I don’t know how much sleep I actually got, but it surely wasn’t much. Results are back on Friday.
I really, really don’t want to have to use a CPAP mask. tygre’s concerned she won’t be able to sleep with the noise, I would have to sleep on my back, and I’d still feel like a big plastic glove was over my face. I’ve been told about other solutions like a dental retainer or other small device that keeps the airways open…those might be better and cheaper ideas. I’m also continuing to lose weight, although there’s no guarantee weight alone will do the trick. My dad lost about 40 pounds after my mom passed away, is fit enough at age 65 to cycle 80 miles in a day, and he still has the worst apnea I’ve ever heard. Still, losing weight is a good thing in and of itself, and I’m down 8.5 pounds in a little over two weeks.
So sorry to hear they’re back with a vengeance, Duke. I think I commented in your last thread, as a fellow chronic migraine sufferer. I’ve had MRI’s, CT scans, nerve induction tests, tried almost every preventative, abortive and off-label med and nothing has seemed to help. (Well, I’ve been unemployed since last March, and I think the lack of work stress/not sitting at a desk all day has helped a bit, but that whole no health insurance so no meds has definitely not!)
Something that I found helpful in dealing with the chronic pain is therapy. One of the neurologists I went to had a couple on staff that dealt specifically with depression from chronic pain conditions, and it helped to have someone to talk to who understood clinically what was going on. Migraines aren’t headaches, they’re a neurological disorder, but you look fine, and having someone to talk to helped assuage some of the guilt I feel for “suffering” when “it’s just headaches”.
Why the hell were they telling you to sleep on your back??? That’s the thing they tell everyone NOT to do. Bizarro.
You do not have to sleep on your back, for sure. I don’t know if you’re a stomach sleeper, which might pose real problems, but if you’re a side sleeper it’s mostly a trick of learning to mush your pillow “just so” to make room for the mask / hose. It’s not difficult.
Noise: a complete nonissue, for what that’s worth. My own CPAP is noisier to me than Typo Knig’s is - I guess because its vibrations translate up the tube to my face, plus I can hear my own breathing in and out of the tube. If there’s zero background noise (rare) then I might be dimly aware of his machine running.
And yeah, not surprising you’re trashed. I’ve been know to come home from the sleep study - and take a sleeping pill so I can get some real rest at home. Seriously.
Oh - and the masks are a lot less instrusive than whatever they tried on you at the study - they probably grabbed a cheap-ass nasal mask (like the one I had for my titration study), without any effort to fit it or make sure it was a good choice for you. Morons. See that earlier link of mine for my opinion of such clinics.
If you do pursue it, I’d seriously demand a better titration study, PREFERABLY at a different lab given their stupidity about the mask and back-sleeping, but definitely after being CORRECTLY fitted for a mask.
Compare these: Something like what was slapped on my face at the titration What I wound up with - this one is actually so light that the weight of the hose can pull it out of position. I’ve learned to drape the hose under my arm to take the weight of it when I’ve got my back to the machine; when I’m sleeping facing it, I just jiggle things back into place as I settle.
And yet another alternative - a Doper mentioned this one to me. I haven’t tried it but it looks intriguing (I don’t think the Doper liked it though).
The results from the sleep study came back. As expected, I was suffering from “profound” apnea, and I’ll be getting a CPAP machine this week. I’m not in the slightest surprised at the diagnosis because I’m waking up 10 to 15 times a night now with apnea, and tygre can hear me choking in my sleep. I’ve rigged up a nightstand which will hopefully muffle the sound a little.
While I was at the neurologist on Friday I also got a shot of painkillers in the back of my neck. That was interesting and tingly. I’m also going to be stepping back from the Depakote a little because my cognitive abilities are not what they used to be. I’ve been feeling so slow on the uptake as compared to before…this is a bad thing at Budget Poker Night, for example. I have been feeling very sad as well. The lack of sleep isn’t helping but more to the point I’m feeling under a mountain at work, responsible for so much at home, and don’t have any social outlet other than the aforementioned Budget Poker Night, where there are no friends but only people out to take your money. Not sure I am going back but it leaves me with nothing.
I’m doing well at one thing, which is good: down about 9 pounds in three weeks towards a goal of 35 pounds weight loss in all. My clothes aren’t so snug any more and I can tie my shoes with ease (I have a long back and short arms, so any resistance at all in the belly region makes it hard to reach my feet). I even brought two dozen donuts for a work meeting today and let other people eat them!
The CPAP machine will NOT be a problem, noise-wise. I guarantee it. We’re a two-hosenose family and when I’m reading (not hooked up) and Typo Knig is already asleep, I have to really concentrate to hear his machine. It’s a low hum - quieter than the forced-air heating, quieter than the bathroom fan, quieter than any kind of white-noise machine.
I did stumble across something the other day that might explain why they wanted you to sleep on your back for the titration portion: since that’s when most people have the most trouble, they want to make sure they measure the settings that will compensate even for that.
Look at some of the earlier CPAP threads - in one I started not-quite 2 years ago, another Doper linked to another forum where I found a lot of excellent information on useful features to ask for. At the very least, you need to insist on a heated humidifier. I personally (reading that) specifically asked for an auto-titrating machine, since I didn’t trust the in-clinic titration results (which have turned out to be not too far from what I’ve needed, as it happens). Other threads have hints on how to position the hose (several folks use a stand or clip-on holder that attaches to the headboard).
Oh - and again, you do not have to sleep on your back. When you meet with someone from the DME provider, ask to try a couple different types of masks. Also browse around at CPAP.com to get an idea of the types of options there are, and which ones are better for, say, active sleepers, folks with facial hair, folks who wear glasses (not that you usually need glasses when you’re getting ready to sleep, but if you like to strap the mask on and relax with the TV or a book for a few… There’s even a whole-face mask (not the mouth-AND-nose which is oddly called full-face, but something that literally covers you from chin to eyebrows. Eeek).
I wanted to post an update. So far I’ve had the CPAP machine for about 10 days. I’m sleeping better but I think it’s too early to decide whether the migraines are receding yet; I’ve had two really bad ones in the last ten days but I don’t think that’s statistically significant yet. I’m “contracted” by my insurance to use the machine for at least 60 days (frustrating, because I paid full price for the thing but it’s in the terms of the aftercare), so perhaps by then I’ll have a better idea of whether it’s having an effect on the migraines.
As I say, sleepwise it’s great. I’m sleeping soundly through the night for the most part. I’m having a hard time adjusting the straps to be tight enough to keep the mask on but not so tight I don’t have lines across my face.
Moodwise I feel terrible, to be perfectly honest. I don’t want to go into it too much but things aren’t going well in just about any phase of my life and I feel like I’m stalling as a person. I was hoping for a big change in my life but my efforts towards that have either borne no fruit or I’ve lost out because other people have dropped the ball. I feel very trapped in where I am now, and I don’t feel like I have people to talk to about it. And here on the SDMB I am feeling very stupid, unable to either express an opinion coherently or have the energy or desire to defend it.
So, I’m going to check into this thread when I can, but I’m going to be absenting myself from the rest of the board. I’m tired of being invisible enough as it is, and it’s hard having another venue that I feel invisible in.
Pain wears you down and makes it hard to focus on good things. It saps your strength and changes your mental habits. It takes time to recover from that, and I hope that the improvement in your sleep will clear the way for that recovery.
I’m a firm believer in the concept that if you’ve got a lot of stuff going on at once, mitigating some of the issues will make it easier to deal with the others.
It sounds to me like “these knobs go to 11” in a number of things in your life (the depression, the headaches), and while I would not expect the apnea fix to cure all of that, maybe it’ll help them get turned down a bit. Or at least the reduced fatigue will help your mental status enough to make them easier to deal with the other stuff set to 11.
If that came off cutesy or flippant, accept my apologies - I really couldn’t think of a better way to phrase it.
Your insurance sounds a little weird - I thought most insurance would cover the rental on the unit for a period of time before converting it to a purchase. Are they saying they’ll reimburse your purchase price after the 60 days?
Not sure if this is any help, but I can definitely sympathize. In July 2010, I went to an amusement park (riding on a particularly rough roller coaster where my head was banged around), and later that evening started to get a headache. The next morning I felt better, but after about 2 hours the headache was back. Advil didn’t help. It got so bad that I almost felt nauseous, so I told my boss I was sick and went home. I laid on the couch, watched some TV, and felt better. The next day, after being awake for 2 hours, it was back again. I began to realize that the headaches only happened when I was upright for a while - sitting or standing. When I was laying down, they went away.
I saw my doctor, who was a total bitch and treated me like I was being a drama queen over “just a headache.” I told her this wasn’t just a headache, it was excruciating. She literally shoved some Advil at me and said it would help. So I saw a neurologist. He gave me an MRI which showed nothing wrong, so he diagnosed me with a migraine, gave me some pill samples and sent me home. They didn’t help either.
Long story short, I endured many many appointments, false diagnoses, and 2 months of agony. I had no idea what was causing it, my husband acted like he thought I was exaggerating the pain, and I had no idea if it would ever go away (and I wondered if I was going crazy because there was no physical evidence of the pain). I got into the habit of arriving at work early and working like mad for 2 hours before the pain set in. Then I would break out my laptop, and work for the rest of the day while lying on the floor. Thank God I don’t have a job that involves standing or working with the public.
I finally went to another neurologist who said it was a spinal fluid leak causing a fluid imbalance in the head, and that it would go away on its own. He figured that it had been brought on by that roller coaster ride. It hadn’t shown up in the MRI, which he said was unusual, but not impossible. How I wished I had seen this guy first! And it did eventually go away on its own. But it was an incredibly scary time. I have now permanently given up riding on roller coasters, or any kind of vaguely rough ride.
Also, Duke, I see you’re in Western New York - me too! If you are feeling in need of a second opinion, I can recommend the second neurologist I saw. Just PM me.
My first neurologist (whom I dubbed “Dr. Useless”) was from a certain major neurological practice that advertises heavily, but after my bad experience with them, I have since heard from other people with similar stories. If that’s who you have been seeing, and if you aren’t happy with them, PM me and I can recommend someone else.
And I have sleep apnea too (although it wasn’t related to my headaches), so can also offer any advice/tips on getting used to the CPAP, although it sounds like things are at least going well in that area so far.
